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Relationships & Disclosure

Relationships & Disclosure

This can be an exciting time in your life. You may be finishing up your education in high school or college or you may even be living on your own and have a job. Maybe you’re still trying to figure things out and living with your parents. Regardless of what you’re doing, you might be thinking about the future and who you would like to share it with. You might be dating someone special now, still looking for the right one, or maybe this is not quite on your mind yet.

Regardless of your relationship status, you may have some questions about dating or being in a supportive positive relationship– like how and when do you disclose your bleeding disorder to your partner? How do you talk to your parents about your relationship? These questions may feel intimidating to navigate, but don’t worry, the sections below address all of these things.

This section of Step Up focuses on Relationships & Disclosure. It covers:

Choosing a Partner: Things to Consider

Whether you’ve been dating someone for a while and are seriously considering if this person is the right one for you in the long term, or just started seeing someone, it’s important to make sure the relationship is healthy. Adding a bleeding disorder to the mix may bring additional special considerations.

What does a healthy relationship look like? A healthy relationship is one where you feel safe. No relationship is perfect and they all take work, but you always should feel safe, physically and emotionally. Other signs a relationship is healthy include:

  • Your partner celebrates you – this does not have to be with huge gestures, but your partner is proud of your accomplishments and successes.
  • Your partner lets you be who you are and respects your differences.
  • You feel like you can be yourself around your partner and can communicate your thoughts and feelings, including when they have hurt your feelings.
  • You both love being around each other but also freely give each other space to pursue interests and spend time with friends and family.
  • You feel respected by your partner.
  • You never feel forced to do something you are not comfortable doing.
  • You have fun together and enjoy being around each other; you feel happy in their presence.
  • You feel you can express your thoughts, be open and honest about your feelings, and trust that your partner will be supportive.
  • Your partner has interests outside of your life together and he or she supports your interests.
  • You partner understands and supports you through managing your bleeding disorder.

Being in a healthy relationship means both people feeling physically and emotionally safe. Relationships take work, require open communication with each other, and some honesty about your own thoughts and feelings. For example, sometimes it may feel hard to be honest about how you are feeling because you feel uncomfortable expressing your feelings and know that it is something you need to work on.  That is very different than feeling like you can’t express your feelings because you are afraid of your partner reacting in a way that would make you feel unsafe. You should always feel safe and loved. If you are not feeling good about yourself in the relationship, it may be a sign the relationship is unhealthy. It can be difficult to talk about feeling unsafe in a relationship. You may be tempted to think you are making too much of it,or being unfair to your partner. But your safety is the most important issue. Try talking to a social worker at your hemophilia treatment center (HTC) or another counselor to get their perspective.

If you think you are in an unhealthy relationship and do not know how to leave, reach out to a parent, teacher, doctor or other trusted adult right away and let them know. You deserve to be with a partner who you feel safe with.

What else should I consider?

When it comes to relationships, it is important to feel understood and accepted for who you are. A bleeding disorder is part of who you are, so it is important that your partner, especially someone you consider a potential long-term partner, accept and embrace your bleeding disorder. This may not be instantaneous and if it’s not something you talk about, they may not feel comfortable talking about it either. Assuming you have disclosed your bleeding disorder and assuming it is something you would like your partner to embrace, here are some questions to help give you a better idea about whether or not this one is a keeper:

  • Does your partner take an active interest in your bleeding disorder? Does he or she want to learn more about and understand the daily care that’s involved in having a bleeding disorder?
  • Does your partner take an interest in you as a person and not just your bleeding disorder?
  • Does your partner want to learn about your bleeding disorder or does he or she consider it to be your problem?
  • Do you feel you can count on your partner's help for support in a crisis or do you think your partner will become an additional burden for you?

Disclosure in Dating & Relationships

When and with whom you share about your bleeding disorder is totally up to you. By this point you have likely had to disclose the details of your bleeding disorder to many people in your life, from friends to teachers and maybe even in romantic situations. Disclosure is truly an ongoing process throughout life. As your relationships may be getting more serious there may be new people, such as parents and friends of partners that you may want to share about your bleeding disorder. A few tips to remember:

  • Be Patient: You may feel like you are starting over, explaining your bleeding disorder yet again to another new person. Putting yourself in that person’s shoes can be helpful to consider any questions or concerns they may have so you are not thrown off guard. For example, if disclosing to your partner’s parents, they may have concerns about their son or daughter dating a person with a chronic condition they don’t really understand. Give them time to adjust, answer their questions calmly, and correct them if they have incorrect information.
  • Educate. Refer them to websites you trust. They can start right here at Steps for Living! Give them written materials to read over at their own pace. Set up a time for them to ask you questions about your bleeding disorder. You could invite them to a chapter event, such as an education day or walk, to meet other people with bleeding disorders.
  • Reassure. Explain to them that your bleeding disorder is treatable, and if you’re comfortable, share with them how you treat it. Address any concerns or questions they may have. For example, parents of a partner may have questions about the genetics of bleeding disorders, and you can share information from How Does a Person Get a Bleeding Disorder?

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